To tell my story, I have to start on October 21, 2013. I had a hysterectomy. While recovering from it, I began to have severe headaches. By November 1, I had a seizure and went to the ER. They checked me out and sent me home. My headaches continue to increase significantly in pain when visiting my surgeon for after surgery follow ups, I would tell him about the headaches, but he would say that it is a common for women to have headaches after a hysterectomy before they begin hormones.
During this time, I was not healing from the hysterectomy, so I continue to see my surgeon weekly still questioning. The headaches just would say they were migraines nothing out of the ordinary, I began having some other symptoms like walking off-balance and bumping in to the walls. I started being nauseous a lot and being able to smell everything. Had I not had a hysterectomy, he would’ve thought I was pregnant.
I was beginning to forget things — go into a store and forget where we parked. My sister and my friend were taking me Christmas shopping on different occasions and noticed some unusual behavior for me. I was talking a lot more than usual to people. I would introduce them to people they already knew like I’ve never met them. They would say they would just follow me around the store, and I was just walking around, not knowing what I was doing for three or four hours. I thought we were Christmas shopping, but they just said I was kind of in my own world. I was continuing to still go see my surgeon because it was not healing still, and he was still saying the same thing about my headaches, never looking in my eyes, never thinking it could be anything else.
One of my best friends started a list of things that I was doing or out of the ordinary for me. On Friday, Dec. 20, 2013, I made an appointment to see my PCP, and I handed him my list that my friend had made for me. He looked in my eyes and told his nurse to schedule an MRI for Monday, December 23. She questioned him a little bit because you have to have prior authorization for an MRI, but he said don’t worry about it and schedule it for Monday. I went and had my MRI on Monday then I received a phone call at 10 a.m. on Christmas Eve that there was a small mass behind my right eyes that we need to get checked out.
My doctor is also my next-door neighbor, and he really wrestled with what he should do about telling me what they found. He did tell me he had an appointment for me with an oncologist at 8 a.m. on December 26 and an appointment with a surgeon at 8:30 a.m. I was like who actually sees patients the day after Christmas at 8 o’clock in the morning?
Christmas was a total war for me. I do not remember anything. I could not sit up or attend the Christmas program my children are in because when I would sit up, I felt like my eyeball was about to fall out and I was in such pain that all I could do was lay down. If I laid my head back, it would relieve some of the pain off of my eye, so I got through Christmas day and that night I was so sick all night and my head continued to hurt. I remember it was so weird.
My husband fell asleep with the TV on. All I could hear was an infomercial about cancer treatments that repeated all night long. I could not sleep, and I continue to throw up all night. We went to see the oncologist first, and he asked me if I had seen the MRI results or anything so he told me that behind my eye was a 7.5-cm tumor that was in my right frontal lobe resting behind my right eye.
The only thing I could think of was my four children and the fact that would be cutting into my head. This was something beyond what I ever thought could happen to me. He was consulting with the surgeon and said they wanted to do surgery today or tomorrow. I asked him what he thought it might be and all he said was there was an 85% chance that it would come back bad, a 15% chance that it will be malignant, and a 5% chance that it was pig poop — just something that was just insignificant or weird. The fact they were concerned and wanted to do surgery so fast, I realized it was not just nothing.
They still could not get an open ER because of the holiday. I left his office and went to see the surgeon immediately. He did show me a picture of the MRI , but I did not really know what I was looking at. He did not say anything definite but it did say that it probably would come back not good. He did say they had an OR open up for 5:30 a.m. on Friday, December 27, 2013. He asked me if I would like that. He was leaving town on Saturday, and we could wait until he got back, or he could help me find another doctor to perform a surgery.
I did know a man from my same town that used this surgeon and the oncologist so I wanted to use him because of my friend’s stepfather. I knew he had brain cancer, but I did not know what type at the time. I was in so much pain I knew I could not wait, so we scheduled the surgery for 5:30 the next morning.
So on Friday, Dec. 27, 2013, I was being wheeled into the OR to have a resection of my brain tumor sitting behind my right eye. As I was going into the OR, I made a comment that this just was so surreal to me that I felt like I was in an episode of Grey’s Anatomy. I could not believe I was about to have something done that I have only seen on TV. The surgeon told my family after it was over that he got everything that he could see and the only thing that would be better is if I never had the tumor to start with.
I woke up, and my new journey began. I started out in the Neuro ICU with friends and family visiting me, the nurses said that unlike most patients after brain surgery, I woke up with a smile on my face and I was kind and talking to them. I spent a few days there before I was transferred to my room. My sister stayed with me in the hospital because my husband does not do well in hospital rooms because he snores so loud, and we knew I cannot rest. I was up doing what I was supposed to be doing. Walking a little bit going to the restroom so my sister worked on trying to get me out of the hospital before the new year started.
I went home about 9 o’clock on December 31. My husband did not realize the pharmacies close early on New Year’s and did not pick up my pain medicine. I went the rest of the night and morning until they opened without pain medicine. I survived the night and started the new year on a path. I never thought I would travel and received a gift that was truly a miracle.
On January 10, 2014, I went to receive the results of the resection. My oncologist explained to me that I had glioblastoma multiforme. I was like, “Excuse me, what did you say?” He said, “Julie, you have an incurable brain cancer, but it is treatable. We are going to fight and we are going to beat this.”
I must say I am so glad my doctor did not tell me any time frames or the magnitude of what I would be facing with GBM as I started this long journey. I did return to my original surgeon, and I was finally released from seeing him. I had finally healed from my hysterectomy, and he was very surprised to hear I had GBM brian cancer.
When my resection site was healed, I began my 30 radiation treatments, and I started Temador. My doctor had me on a five day on, two days off regimen for two years continuous — no breaks. So in January 2016, he changed my chemo to Avastin. I begin going every other week for a treatment for five years. My blood pressure went sky-high stroke level and I was taking incredible amount of blood pressure medicine just to keep it manageable.
I continue to have headaches and body aches. I was having mini strokes and occasional seizures after 5 years of Avastin, my insurance made me change to Mvasi.
Two years of that was enough to enlarge my spleen to 25-cm long, cause cirrhosis in my liver, and my liver started turning carotic. In April 2022, I stopped the Mvasi.
They did an MRI on October 31, 2022, and it showed two tiny spots. They repeated on December 1 with a more detailed MRI. I began Temador back the 28-day cycle regimen immediately and an MRI in February. They show the spots were not there. We were so thankful, and I know I am blessed. After being off Mvasi for a year, I am really beginning to tell a difference.
In May, my sister, two friends from college, and I took an Alaskan cruise. I have not felt as good as I did on that cruise in over seven years today. I had a visit with my oncologist, and we were discussing how much better I feel and look this year as compared to last year, I am so thankful that my doctor has put me back on Temodar, and I am feeling stronger and better and ready to continue to conquer GBM and spread awareness and give hope to others who are battling this awful disease.
Why do I say it was a gift I received at Christmas? Because without being diagnosed with GBM, I would not have met people that I have met. I would not be able to make some changes in my life that I have needed to make even before I was diagnosed, and now I feel strong enough and know that I am strong enough to face anything since I am a GBM fighter.
I will continue to fight until the cure is found, and I will help others do the same and help raise awareness. My goal in 2024, while I am celebrating my 10th year of beating GBM, is to raise $100,000 for brain cancer research. My family formed a nonprofit foundation in 2017. We hosted three 5K races and raised $85,000 which we donated to pediatric brain cancer research.
We had to stop having the races during the pandemic but now that it is over, I am planning to have a 5K in May 2024 during brain cancer awareness month. We call it Go Gray in May 5K, and I am so ready to get back into raising awareness and being among people again since the pandemic kept us away from each other.
I plan to also celebrate 10 years by going to Washington, D.C., in May 2024 and participate in Head to the Hill and do my part in person. I have participated in the virtual years, but was not able to make it this year. I plan to in the future because I will continue to fight for myself, and for everyone else to find a cure for GBM.
May God bless everyone who fights, and continue to bless everyone who helps raise awareness and is helping to find the cure for GBM. I have so much more to share and tell about my journey. I hope I am able to share my story to as many people as I can and increase awareness everywhere I go. I was not able to finish yesterday because of my doctor’s visit with my oncologist but while I was there, I was amazed at how many people, patients, nurses, and anyone I could speak to who were very kind and listened to me talk about GBM Awareness Day. It was a blessing to share my story with so many people yesterday.
